People with all subtypes of recessive dystrophic epidermolysis bullosa (RDEB) usually report that the skin-related disease has a substantial impact on their health-related quality of life, but a new study shows that the perceived impact of RDEB among patients tends to lessen over time. These findings suggest that,…
Discussion
In the 38 years that I’ve been living with recessive dystrophic epidermolysis bullosa (EB), I have learned that those of us with the condition, as well as those who care for us, must adapt over time to the extra preparation the disease requires. When I was a child,…
Parents reported that oral health problems lead to a poorer quality of life for their children with epidermolysis bullosa (EB), a study in Brazil shows. Overall, children with EB had more oral lesions, such as blisters and ulcers, and higher levels of gingival inflammation (inflammation of the gums) and…
Becoming educated and informed about epidermolysis bullosa is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your EB journey.
There is no cure for EB yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
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